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Talking About Your Brain Tumor

Telling your family and friends you have a brain tumor is not easy. Sometimes those who care about you don’t know what to say. They may feel sad and uncomfortable. They may be afraid of upsetting you. They may resort to false cheeriness and choose their words out of caution and concern for blurting out the wrong thing.

Despite these factors, it is important to share the news with those who are close to you on a day-to-day basis. A supportive network that understands your illness and the options available to you will understand what you may need from them and how they can be most helpful. Here are some suggestions for talking about your needs to those you love.

Telling Your Immediate Family Members

Think about what you want to initially share. You may want to explain what kind of tumor you have, what treatments you might need, and what the doctor says about your prognosis. It is common for those who love you to ask many questions, and it is okay for you to suggest that you talk about it in more detail later.

If it feels too difficult telling close family members, consider having a care conference with your family and doctor. The doctor can speak more objectively about the road ahead.

Communicating with Other Family Members and Friends

After giving your friends and family members some preliminary details, you may want to refer them to a pre-arranged spokesperson, probably a family member, so you don’t have to repeat the details.

Sometimes, those who care about you have good intentions but may not say the right things. You may want to identify topics that are too sensitive to handle. Do you get angry when people question your doctor’s qualifications or your anticipated treatment? Does it bother you when they resort to clichés such as, “You’re never given more than you can handle”? Plan a response in advance to help you politely exit the conversation. For example, you may want to say “I really get tired of talking about my brain tumor. Tell me what’s going on with you!”

Talking with Your Children

If you are a parent with children and you have a brain tumor, keep in mind that the age of your children will be important. Younger children up to eight years old may not need a lot of detailed information, while older children (ages eight to teens) may want to know more. All children should be told the basics: the type of tumor you have, how it will be treated, and how their own lives will be affected.

First, set up a quiet time when you will not be disturbed. You may wish to talk to each child alone, so you can tailor the information to what that child will understand. It helps to plan out what you will say beforehand. Remember, children use their imaginations to fill in the gap and their fantasies can cause undue fears and anxieties. Give them information in words they can relate to and reply honestly and simply to their questions. Here are some sample explanations, adapted to your conversations with your young ones.

"The doctor wants to do some tests to find out why I am having these headaches."

"A brain tumor is a lump in the brain that doesn't belong there. The doctor is going to operate to take it out."

"No one knows for sure what causes a brain tumor. They just happen. We don't catch brain tumors from other people."

"Would you like to talk about this? What would you like to ask?"

Above all, reassure your children they are loved and will be taken care of. For additional suggestions and explanations children can understand, please call the ABTA CareLine at 800-886-ABTA (2282).